Platelet E-News: June 15, 2010

This e-newsletter is a monthly publication of the Platelet Disorder Support Association. The information in this newsletter is for educational purposes only. For advice on your unique medical condition, please consult a health care professional.

ITP Research and Treatments

In this Italian study, patients were separated into two groups, one that received four days of dexamethasone (a type of corticosteroid) and another that received four days of dexamethasone plus rituximab (Rituxan). After six months, 63% of the patients in the dexamethasone plus rituximab group had a platelet count greater than 50,000 versus 36% of the patients who received only dexamethasone. However, the patients receiving combination therapy had more adverse events.

ITP PATIENTS WITH AUTOIMMUNE THYROID DISEASE MAY BE MORE DIFFICULT TO TREAT

About 24% of people with ITP have an autoimmune thyroid disease, with the diagnoses possibly separated by years. The presence of these two conditions may signal a more significant problem with the patient’s immune system and a reduced response to ITP treatments. Since some ITP patients recover when their underlying thyroid condition is treated, the authors suggest that physicians consider testing for thyroid hormones when treating ITP patients.

NEW SUMMARY OF H.PYLORI TESTS AND TREATMENTS

The New England Journal of Medicine recently published a clinical review article that details the tests and treatments for H. pylori, a type of bacteria found in the gastric system. The presence of H. pylori can be easily detected using a breath or stool test and can be eradicated with a combination of antibiotics. Note: the platelets of some ITP patients infected with H. pylori improved after the bacteria were eradicated.

X-linked thrombocytopenia (XLT), caused by a mutation of the Wiskott-Aldrich syndrome (WAS) protein gene, is a male, low-platelet disease, accompanied by eczema (flaky skin), an increased risk of infections, and possibly other attributes. In a recent study of 173 XLT patients from 12 countries, researchers concluded that there was a good chance of long-term survival for these patients, along with a high probability of disease-related complications. Splenectomized boys and men with XLT had almost as many bleeding episodes as those without a splenectomy and a higher incidence of severe infection.

Hospitals, Insurance, and Medical Care

A RARE DISEASE ADVISORY PANEL WILL BE INCLUDED IN COMPARATIVE EFFECTIVENESS RESEARCH

The new US healthcare law, the Patient Protection and Affordable Care Act (PPACA), includes rules concerning federal comparative effectiveness research (CER) studies used to determine which of several approaches to treatment work best. For rare diseases (including ITP), the law stipulates that an expert advisory panel consisting of patients and clinicians provide input to the relative value and feasibility of the proposed research. There are also provisions in the law to avoid decisions based entirely on cost considerations and to avoid insurance and patient discrimination based on the CER findings.

SEVERAL CHILDHOOD VACCINES WORRY PARENTS MORE THAN OTHERS

In a recent survey of 1,500 parents, almost all agreed that vaccines are a good way to protect their children from disease. However, about half of the parents had safety concerns about childhood vaccines and 12% had refused at least one vaccination for their child. The most frequently cited safety concerns were for the human papillomavirus (HPV), meningococcal, measles/mumps/rubella (MMR), and chickenpox (varicella) vaccines.

General Health and Medicine

KILLER FUNGUS C. GATTII HAS SICKENED HUMANS AND ANIMALS IN THE PACIFIC NORTHWEST

A tropical fungus, Cryptococcus gattii, has been infecting (and sometimes killing) people and animals in the Northwest US and British Columbia at an increasing rate, although the incidence is still extremely low. Now the fungus, found in trees and in the soil, is mutating and spreading to other geographic areas. The infection, characterized by chest pain, cough, shortness-of-breath, fever, and possibly meningitis, is treated with anti-fungal drugs. Those who are immune-compromised are particularly susceptible.

RESEARCHER SUGGESTS ENHANCING THE PLACEBO EFFECT

Instead of ignoring or dismissing it, Harvard professor Ted Kaptchuk suggests embracing the placebo effect to improve health with lower risk. In some studies for knee surgery, antidepressants, acupuncture, and other treatments, the placebo group had similar or better results than the treatment group. Kaptchuk feels it is the medical ritual (the expectations, conversations, and mechanics) that explains the positive results. He is leading a project, funded by the National Institutes of Health, to learn more.

About PDSA

Stay Informed

IMPORTANT!

The Platelet Disorder Support Association does not provide medical advice or endorse any medication, vitamins or herbs. The information contained herein is not intended nor implied to be a substitute for professional medical advice and is provided for educational purposes only. Always seek the advice of your physician or other qualified healthcare provider before starting any new treatment, discontinuing an existing treatment and to discuss any questions you may have regarding your unique medical condition.